Friday, February 28, 2014

Yesterday we stopped to pick up a few groceries so that we could make supper in our hotel room, which has a small kitchen. It's a nice little break between work and home, a distraction from thinking about and reviewing the events of the day. For me as a lecturer, sometimes it's hard to shake the sense of worry about my presentation, my message and my performance, so having something else to do provides a welcome mental break.

Joe had asked me to pick up money from the bank machine inside while he parked the car. I said that I would and that's what I did. The bank machine was placed against a wall in the area where people get carts and where people who'd finished shopping and were leaving the store would pass by. I was aware that it was a high traffic area so I pulled my chair round so it was sitting beside, lengthwise, the wall even though this made it a little more difficult for me to use. I didn't want to be in the way. I didn't want to block anyone's use of space.

I figure the world is better if everyone respects everyone else's space.

People were flowing by, both ways, as I got my card out and inserted it into the machine. I was pleased with myself because I clearly had parked well, clearly had left enough space. As I was punching in my PIN number a woman, with a cart stopped, made an 'I'm frustrated' gesture and glared at me. I looked at her and said, 'There's enough room. People have been passing, both ways, the whole time I've been here.' Then I went back to doing what I needed to do, even though I could feel her hostile gaze.

She's refusing to move.

She says, 'You people take up too much room.'

There is a line up of people forming behind her, they aren't looking at her, they are looking at me. Lovely. Freaking lovely. I get my money, put it in my wallet and now I want to leave. But I can't. She is blocking my way. I ask her politely to move on.

She won't.

The manager sees the line up and comes over to see the problem. I am ready to be identified as the problem. He looks at the space and after hearing her say I was blocking the way, he says, 'It looks to me as if he's left you plenty of room, please move out of everyone's way.' She doesn't. He says, 'I will get your cart through, She lets him take it and move it past me. Everyone else flows by, a couple say, 'Sorry,' which indicates that they saw that the problem wasn't me or the space I used.

As we were going through the store picking up the few things we needed I saw the manager and went to thank him. He just smiled and said, 'People can be odd.' I just nodded. Then he said, 'You must get tired, sometimes, of people who need to dump their issues on you.'

I don't know where he got that insight.

I don't know what he saw in that encounter.

But what he said mattered. Really mattered. When I remember this incident it will be because of his kindness and insight, not her aggression and hostility. There is no greater gift he could have given me.

Thursday, February 27, 2014

It's a day where we are asked to wear pink shirts as an anti-bullying statement.

I'm glad there is such a day, I'm glad that people are responding to the issue of bullying, I'm glad of all that.

The focus, though, I think needs to either shift or broaden if we ever are going to do anything effective, anything other than be symbolic about bullying.

As a fat kid I was bullied, on a routine basis.

As a fat adult I experience a different kind of bullying, but bullying nonetheless.

And while I hold only the bully accountable ...

... part of me, a big part of me, wants to make silence accountable. I remember one incident, that I don't wish to share here with you, where a crowd watched me being hurt and humiliated by two bullies. They stood and watched. I knew many of the people in that crowd to be good people. I had thought they were good people. But they stood silent and let it happen.

Without comment.

Later they tried to comfort me.

But I didn't need their words then.

I needed them before.

One of my biggest and most powerful memories of school was when a boy, so far above my status within the school hierarchy that we almost never even breathed the same air, broke from a group, that watched, and grabbed the person who had me on the floor, pinned down, and yanked him away from me. He told that kid that he was to leave me alone, that he was never to touch me again. I, still, all these years later remember that moment with clarity.

He wasn't silent.

He did what people who say they are anti-bullying need to do.

Anti-bullying isn't a sentiment and isn't expressed by wearing a symbol. It's an action.

While those who wear pink shirts need to be lauded, and I do laud the movement and the symbol and the history behind it. Their focus needs to be on the bully, and on the silence which is the fertile soil in which violence grows..

Wednesday, February 26, 2014

Not for the big things like, life, love, laughter. For these gratitude should be as constant as breath. I'm talking about a moment that is sparked by realization, by seeing something for exactly what it is as well as what it represents, and then being overcome by a wash of gratitude.

I have this from time to time. The first time I really noticed it was when I was driving to work and I stopped at a light. A man with Down Syndrome was walking across the crosswalk holding his girlfriends hand. I felt this immediate and deep sense of gratitude to be living in this time and in this place - I felt a gratitude for all those who came before, who fought big fights, who stood alone in the face of a shitstorm of protest, who came together to change the course of history. Segregated wards would one day become something more, something very different ... city streets and public affection. I was grateful, deeply grateful, to be there in the car seeing history ... years and years of history.

It happened again this morning. I was getting dressed and I looked up and into the bathroom. I saw a tall toilet surrounded by bars on the wall. And, in an instant, I saw it all. I saw the years of uninclusion and the years of unwelcome and the years of structural barriers erected to keep us all out. I saw the marches and the protests and the fight simply to be able to have access to where access had been purposely denied. I thought about what I was doing in this hotel room, getting dressed to go to work, to give a lecture, to be with people. In a town five hours by car from home. But it could have been around the world. People fought so I could have the world.

I felt a deep and personal gratitude for the toilet, the bars, and the people who fought for me to have what I have and live how I live and do what I do. I may, from time to time, feel alone in this world and in this life with a disability, but I only have to look at a cut curb or a ramped entrance to know that I am, indeed, never truly alone.

Monday, February 24, 2014

Yesterday the winners of the Canadian Blog Awards were announced. You will know, because I'd mentioned it a couple of time before when asking you to vote for Rolling Around in My Head, that I'd been nominated in two categories. I was up for Best Personal Blog and for Best Health Blog.

When I received an email alerting me to the fact that the awards had been announced, I raced to the computer and found that I had won first place in both categories. I was really, really pleased. Who doesn't like winning an award?

What made this really important to me is that so many of you would have had to find the energy and take the time to go and vote. Clearly enough of you did this for me to take both categories. I am deeply thankful for that.

You will see, if you scroll through the award announcement that Belinda's "Whatever He Says" won first in the Religion and Spirituality category, Celine's "Running on Carbs" won second in the Sports category and Liz's "Life With Bellymonster" won second in the Humourous category and third in the Family category. All these blogs, from time to time, also write about issues regarding health and disability.

Sunday, February 23, 2014

I've written about our local pub before, about how welcoming the people there are, about how they make space, in a small space, for me and my chair. Joe and I decided to go there yesterday because we'd won 25 dollars from scratch and win tickets and we wanted to spend it on beer. Then we can tell everyone that we spent the weekend drinking away our gambling earnings. It will spice up our 'go to bed at eight' image. And by the way, we still got to bed at eight.

We got comfortably seated at a table and chatted with a few of the regulars while watching replays of that day's Olympic events on the screen. It was fun. We hadn't been to the pub in a long while and it was nice to be back, soaking up the atmosphere. I had my tea in front of me, bought with money other than the 25 we'd won. Boozing and gambling is one thing but lying is another. We were having fun.

Suddenly standing beside me is one of the fellows who works in the bar. He's really friendly and a pleasure to chat with. He came to tell me that there was a 'Out of Order' sign on the disabled washroom because some water was coming through from the melting snow on the ceiling BUT, he emphasized, he'd jerry-rigged the situation so that I'd be able to use it with no problem. It's out of order for everyone else, but it's working for me. I looked at him with some awe, he didn't look like the kind of guy who could MacGyver a disabled loo, but there you are, looks can be deceiving.

I relaxed into my chair, sipped on my tea, and steeped in the sense of welcome.

Saturday, February 22, 2014

I am not 'labeled with a disability.' I am not victim of a random labelling machine that randomly applies stickers to the foreheads of those unfortunate enough to be within it's reach. No. That didn't happen. I refused to use the language of victimization to describe a simple state of being.

I am disabled.

I have a disability.

Disability is part of who I am and how I experience the world.

I am not ashamed of who I am, I don't need complicated linguistic tricks to describe myself. I don't use language to euthanize my disability. I don't have 'special needs' and I am not, god forbid, 'differently abled.'

I am disabled.

I have a disability.

Disability exists, is real and is part of, and this may surprise you, the concept of human diversity.

I am not 'person first disabled,' I am just regular disabled. I don't believe that we are the only minority who's being is so far from the embrace of humanity that I have to specifically point out that I'm a person. I am not a person who is gay, I am gay. I am not a person who is fat, I am fat. I use person first language when it is required of me or when it's the choice of another person who prefers that terminology. But me, I'm barefaced disabled. Look me in the eye and try to deny my personhood, disabled. Disabled and what do you want to make of it, disabled.

This may, or may not surprise you, but I don't like candy very much. I don't include 'chocolate' in the category of 'candy,' of course, it being the only edible that I would petition to be included on Maslow's hierarchy of needs. So that is where we begin, I'm not your neighbourhood candy man.

A couple of weeks ago I was at a small event where there were people with intellectual disabilities in attendance along with a smattering of staff around the edges of the gathering. I was getting set up to do a presentation and a couple of support workers were talking with me. A fellow with a disability stood off to the side, waiting for a break in the conversation, I nodded to him, letting him know that I'd see him and I'd speak with him next.

When the women I was speaking to were finishing up, he move forward, carefully. He moved as if he'd learned, long ago, to be constantly wary. He moved as if he knew that there was the possibility of hurt at any moment, at any time, from any one. He moved, then, with courage. His hand slowly reached in his pocket and he pulled out some candies. He carefully counted out three. He handed one to me, never has a hand approached me with such gentleness, such caution. I took the candy, thanked him very much for his generosity. He brightened, smiled.

He turned to the woman standing beside him and she saw the candy coming towards her, offered by a gentle hand and a generous heart. "What! You trying to make me fat?" she laughed. His face registered pain, and me, my fat self had to restrain itself from responding. The other woman, before even being offered the third mint, said, "I don't eat candy." Then. They left.

He stood there.

I saw his hand.

With two candies in it.

Shaking.

I said to him, "If those are still on offer, I know two little girls who would love that candy." He looked at me, "What are their names?" I said, "Ruby and Sadie," and as I spoke their names, he started to cry.

Thursday, February 20, 2014

The first time it happened, I felt uncomfortable, but I wrote it off. It was one interaction, it didn't mean anything, it wasn't part of a larger patter, representative of a larger social response to disability. Then it happened again. And finally again. Hmmmm.

Each time it happened, the situation was the same. I'd been going along a sidewalk, a nice law abiding citizen, and I had to stop because I'd run into some kind of barrier. In many places, the snow has been shovelled only blade wide. Non-disabled walkers could make their way through, but the passage was too narrow and putting one tire on the cleared path and the other on the snow would dangerously tip my wheelchair. In other places the sidewalk was blocked by a ridge of snow left from someone plowing a driveway. These are the realities of winter in Canada. In each case I've had to go cross in other ways. Often I go back to a curb cut and go on the road. Nothing much has happened when I do that.

The other times were when there was a problem. I'd find a driveway or a place where snow and ice have formed kind of a natural ramp that I can take down to the road from the sidewalk. In each of these situations I have not been alone in the decision to cross the road. Pedestrians not wanting to go through the narrow pathway or step over a barrier, have also done the same thing. We wait and then dash across the road.

Three times now I've a drivers, of both genders, roll their windows down and speak to me. They spoke to none of the others who had crossed the road with me, just me. When the first window came down I thought I was going to get 'pedestrian get out of my freaking way' stuff from the driver. But instead I got a "do you know it's unsafe to cross the road like this, you should look for crosswalks." I got advice. I got information. I got sad smiles that came with encouraging words like, "you'll do better next time." I would have rather been told to "get the fuck off the road."

None. Not one. Felt it was necessary to give advice or encouragement to the other, walking pedestrians. They it seemed had made reasonable choices for their access, I, however, was breaking a rule and needed corrective criticism.

Some will say that they are making the assumption that they are treating me as if I have an intellectual disability. I think that's too easy an answer and in this case I don't think that's true. I have often stated that when people use patronizing approaches and childish tones when speaking to me 'as if I have an intellectual disability' that NO ONE should be spoken to that way INCLUDING people with intellectual disabilities.

I think, and maybe I'm way off base, that my status as a disabled person puts me in the role of care-recipient of anyone who feels the need to slip into the role of care provider. Suddenly strangers adopt the attitude of 'let me help you out, poor deluded cripple guy,' or 'oh, I see you don't have a care provider with you, poor man, well, I'll do that for you right now.' I think seeing disability is a trigger for THERE IS SOMEONE WHO NEEDS HELP, RUSH TO HELP, RUSH TO HELP.

What ever it is, I think its the first time I've ever wished that someone would have said, 'Get the fuck out of my way!'

Wednesday, February 19, 2014

The last couple of days I've been away from home and using my manual chair. As I've mentioned before I'm using my power chair more often and, as a result, I've been doing exercises aimed at keeping up my upper body strength so that when I do have to use my manual, I still have the power to do so. Well, the good news is that it's working. Even though it's been a fairly long while since I've had to push long distances on carpet, I was able to do so fairly easily. I was really pleased with this as I've a couple of long trips coming up where I'll only have the use of my manual chair and I didn't want to have my mobility even more limited because I'd lost the strength to push myself.

But, this story isn't about that.

I was pushing myself to one of the rooms I was going to present in, the floor was a good floor for pushing and I had got up a good speed. A woman called out my name, saying hello, so I grabbed my wheels and swung round in the direction the voice had come. The voice belonged to a woman with an intellectual disability who was there to hear me speak, we'd met each other before and she wanted to greet me and catch up.

Parenthetically I'd like to say just how much things have changed. I thought of this change as we spoke. She told me about her life, her relationships the things that she had going on. It was interesting to hear what'd happened over the few years that had passed since we saw each other. Twenty years ago, if you ran into someone with an intellectual disability that you hadn't seen for a couple years, they would have precious little news to tell you. Lives, in those days, were determined by systems and run by others. This is no longer true for so many (while it is still true for many, many more). Anyways, I was pleased that she had a life to tell me about.

But this story isn't about that.

I said, at one point, that I needed to get to the room in order to get ready. She piped up and said, "Let me push you there." I said, "No, thanks, I can do it on my own." She said, "OK." Then she walked along side me chatting saying, "People should listen when people with disabilities say 'no' shouldn't they? They should respect what we say." I told her that I couldn't agree more. "People like you and me understand that don't we?" I said that we did.

Tuesday, February 18, 2014

We are rushing because the weather's turned bad again and we're going to have to leave earlier to get to the venue where I'll be giving a lecture this morning - The aRe Word: How to Support People with Intellectual Disabilities who Tell You That They are Being Teased and Bullied. I'll be in Peterborough this morning and Oshawa this afternoon.

I'm impressed when I'm asked to give this lecture.
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So often the 'just ignore it' movement - the one that suggests that this is a solution - has people thinking that by saying those three little words, they've intervened and supported - denies that there should be any training at all.

Then there's the 'they've got to just tough it up' movement - the one that suggests feeling pain where pain was intended is simply weakness. 'This is the way the world is, they better get used to it' is the mantra of the toughen uppers and they think that this kind of training is coddling.

And of course there's the 'they don't get it anyway so why draw it to their attention' movement. It's one that is absolutely convinced that people with intellectual disabilities don't recognize or fear hostility. They figure this kind of training and discussion does damage to people with disabilities.

So, when I get asked to do this workshop and when lots of people sign up, as is the case today, it means that there are those who see the problem and who want to engage in talking about solutions.

Monday, February 17, 2014

I came to hate the word 'family' when it became wedded to the word 'values.' In reality, the idea of family values shouldn't be a concern at all. Because families are supposed, at least I thought, to value love and commitment and safety and warmth and everlasting welcome. But when 'family' walked down the aisle with 'values' ... an ugly thing was created. It became about politics and prejudice not about loving hearts and open arms. I shuttered whenever I heard someone use the term 'family values.'

Because I had been exempted from existing as a family member.

Because those I knew were being called a 'threat to the family.'

We were treated as if we were born under rocks not into homes.

Family values led to abandonment of family values. Children were turfed out of homes and into the street. Children were killing themselves in fear of their family and their families reaction to their difference. Family values indeed.

But.

Years have passed. Things are changing. And I have been deeply affected by those changes.

It all started when I saw what real family values could do. When I sat with elderly parents of a man with Down Syndrome as they told me the story of doctors and social workers and relatives all trying to force them to institutionalize their son. They refused. In the face of all this pressure, they stood strong. They were told if they valued their family, they would listen to the professionals and let their son be taken away - this boy, this boy would could never be a son, would destroy their family. They pulled together as a couple, their other children joined with them, and as a family they defied expert opinion, social pressure and societal disapproval. Their son would know family and would feel value. They raised a remarkable man. A remarkable son. A remarkable brother. A remarkable husband.

I saw first hand what families could do.

I remember the first time I was marching in a Pride march and saw a woman, standing all alone, on the side of the road, holding up a sign. "I love my gay son." I cried the whole rest of the way in the march. I couldn't stop. I was so moved. This was a time, long before now, where the issue of gay teen homelessness was at its height. Kids were battered, bruised and expelled from homes simply because of their difference. But here, a woman, stood courageously saying that in her family, her son was valued.

I understood, from those five words, what it meant for a family to actually be a family.

Those experiences and many, many, many, others have brought me round. I understand that values and family can be a powerful force for good, a powerful force for change and a powerful starting point for those who are different - in any way.

In that vein, I'd like to share a post with you about a family, a boy, and a dog. And while the story is of the love of between the boy and his dog. Notice too, the love between parents and child, and
all embracing love. A love that, without which, happy stories, like this one, could never be told.

Saturday, February 15, 2014

I'm going to tell you what I came up with in response to the question, and I'd like to ask you what your answer would have been.

The question:

What is at the core of patience?

I was asked this by a young staff who was unburdening herself to me, speaking of some real frustrations working with someone who uses every form of aggression as a means of keeping themselves safe from closeness with others. He seems afraid, deeply afraid, of any kind of human attachment. He'd rather have people fearful of him than let people get close to him in any way. She understood, given his history, why he might feel this way, but she genuinely likes him, genuinely cares about his well being, and genuinely fears that he will live his live alone in an anger bubble. She said, "I know I need to be patient."

I nodded sagely. This takes more skill than you might imagine.

Then she looked at me being all sage-like and said, "What do you suppose is at the core of patience?"

Suddenly I lost the sage look and, forgive the pun, tried to buy thyme.

Yesterday I asked her if I could put my answer on my blog. She agreed instantaneously.

What is at the core of patience?

Dear L.

I think I would have answered this differently when I was younger. Though I've never asked myself this question outright, I have thought about the issue, and I thought about it mostly when in situations like you find yourself in now. As a younger man I would have said that 'kindness' was at the core of patience. And I see how I might have thought that. Kindness implies a kind of compassionate caring for the well being of another. Kindness asks us to push aside all impulses except the impulse to compassion. Kindness makes us better people and makes us better at being present with others.

While all those things are true about kindness, and while I think kindness is a great part of what it is to be patient, that's not what you asked me. You asked me what's at the core of patience. As an older man I think that patience comes from an appreciation of, simply, time. In my sixties now I see time flying by at such a rapid pace, I see that everyone is caught up with the rush to keep up with time. People are so busy and feel such pressure to be busy that they must do all at once, talk on the phone while lunching with a friend while making notes for a meeting later. Thinking about supper for the kids while driving to work while figuring how to organize the day. Even when at dead stop, people that rush down sidewalks not seeing anything other than their watch and their destination, are rushing inside. You can see it as people sit over a cup of tea, their minds are rushing about, pinging ideas and worries and pressures around in their heads. BUSY.

Patience requires grabbing hold of time and slowing it down. Patience requires the skill to recognize that in any give moment you control time, you control how it flows inside of you and you control how it flows around you. Patience means putting the rush aside and simply being where you need to be, doing what you need to do and sharing the sense of calm that comes with that with another person. Patience means losing frustration, because it doesn't matter that it takes time; it means losing annoyance, because you have time breathe, really breathe; it means losing anger because when time is slowed down, when breaths are taken you can see what's really needed and what's really going on. It is when we rush that we make assessments that are based on emotion not fact; it is when we rush that we rely on assumption and therefore ask no questions; there is a reason we say that we shouldn't 'rush to judgement.'

So I think at the core of patience is the practised ability to slow down time, to take control of a moment, to let yourself simply be and breathe and become.

I look over my life and my list of regrets come from those times when I rushed, without thinking; rushed without compassion; rushed to pull the trigger of my temper ... and I feel the losses that came because of those actions.

Friday, February 14, 2014

When I went on-line this morning to connect with my office at work, I checked my emails. One of them was a group email reminding people of the Valentine's Day dance tonight. I knew that there were multiple events happening; a big 'couple's night out' at a fancy restaurant and, of course, the dance being the two biggest. I knew that many people with disabilities had been planning on attending the dance with their partners and with their fiances. The place has been buzzing with anticipation for a couple weeks now.

It seems to me, that Valentine's day, is second only to Christmas as a holiday to be most joyously anticipated and celebrated around Vita. This surprises me. I am jaded about Valentine's day ... I don't have a good history with it. Don't much like it in fact. But, that's me. And this isn't about me. I notice the genuine joy and anticipation that builds as the big day gets closer.

And I wonder about that.

And then realize, it is no wonder.

People with disabilities have more than a difficult history when it comes to matters of the heart, when it comes to love and relationships. It might not be seemly to write of the violence perpetrated on the bodies of people with disabilities ... the castrations, the forced sterilisations on a day celebrated with lace and chocolate. But you can't understand the one without recognizing the other.

Years ago, after hearing the story of a man with a disability, beaten because he was caught making love with his boyfriend, forcibly separated from the man that he loved, and who endured years of taunting and bullying by those paid to care for him, I decided to do something. Along with the direct support staff who worked most closely with him. We worked at finding the other man, his long lost love, and we brought them back together. Too much had happened, too much pain, they met, they embraced, they cried for a very long time in each other's arms and then the said 'goodbye.' Neither could conceive of a relationship, with anyone, ever. But they wanted the goodbye. He said to me, after it was over, "Love is wrong, people hurt you for it."

Years ago, after hearing the story of a man who was punished, sent to his room without dinner, for being caught with his girlfriend, in a downstairs room. He came out of that room to find that she was gone from his life. He never saw her again. I offered to help him try and find her. He just shook his head and said no. He said it was too late. He said he was too afraid. He said that he was worried that she hated him for getting her in trouble. "She lost her home because of me. She lost her friends." I offered a few times but then stopped offering when he asked me to stop offering.

These stories are not uncommon. These stories are still happening. While it is better, while people with disabilities are beginning to have the right to relationship, the right for sexual expression, the right to use the heart for other than the pumping of blood, it is better for a tiny minority of people.

There are still those who stand guard over the lives, the bodies and the hearts of people with intellectual disabilities. There are those who write policies that police rather than free. There are still staff who believe that their opinions should become people with disabilities facts.

So, tonight at the dance, partners and lovers will be together, openly, and without fear of punishment. What will happen there, mundane to many who've lived in freedom, will be a riotous act of liberation. Music will play, bodies will move, lips will touch. Valentine's will happen.

Forget the chocolate.

Forget the cards.

Remember it's love that is always revolutionary.

Happy Valentine's Day ... let your love shake up your world.

(photo description: A man with Down Syndrome leans over to kiss the cheek of a woman with Down Syndrome. Her eyes are closed as she enjoys his kiss.)

Thursday, February 13, 2014

We were with a few friends out for tea and one of them joked, "Read Dave's blog for a week and you'll read about doors or toilets." "Another added in," in the spirit of good fun, "and shopping, don't forget shopping."

HA HA, yeah nice getting together with you all too!

I admit that there are themes which run through blogs that focus on any one particular topics. Like I'll bet science blogs focus, occasionally, on, um, sciencey things. But I agree with my friends that topics that are mundane for those without disabilities are often the subject of harrowing stories and outrageous tales. Doors and toilets indeed.

This is all by the way of telling you that I'm aware of these as part of the tapestry of this blog and even so, I'm going to do it again. A door story.

I was entering a store alone, as Joe was off getting money at the bank machine, and had gotten easily through the first set of doors. I noticed a woman, racing, really racing, from the counter inside to get to the second door. As it took me a few minutes to pull open the outer door, realign my chair for entry, and then go through, she got there first. She was inside the narrow space between outer and inner doors and I was now stuck. She was a woman of some size and she stood with her back to the wall, holding the door open for me. The problem was I simply couldn't get my chair around the door which was at such an angle that straight entry was impossible.

I smiled at her and said, "You know what would help?" She asked eagerly what she could do, and I responded nicely, "It would really help if you didn't help." She grinned and said that made sense. I took the door from her, held it open as she left and then entered the store. That was all fine. I went shopping.

I found what I wanted, purchased it from the woman who had attempted to help me, we laughed about the incident. It was all very friendly.

On my way out the store manager approached me an apologized for her employees behaviour. I was baffled, she'd done nothing wrong. As the manager talked I could see that what she was doing was apologizing for her employees weight. Now, I'm not a physicist (what do they do?) but the set up of the entry is such that there is no room for anyone to stand behind the door and allow straight entry. No one is that skinny. She's apologizing to a fat guy for a chubby woman's size!!

Her point, when she got around to it, was that the store wanted to be welcoming to people with disabilities so that's what her, um, large employee (she loved saying that) was so eager to help. I smiled and said, "So as the store manager you want to create a welcoming atmosphere for people with disabilities?"

"That's exactly it!" she said.

"Well, then, why don't you simply install automatic door openers so people with disabilities can enter entirely without the thought of help from another?THAT would be welcoming."

She spluttered something unintelligible so I said, "It seems to me that your, um, large employee, was simply trying to personally make up for a structural barrier that should never have been there in the first place. I say, 'good on her.'This is a fairly new store, was it you, as manager, that made the decision to make access difficult? Someone had to have decided to not install accessible doors."

"I was just trying to be nice, you don't have to be so aggressive." She said and turned to walk away.

Now, I hadn't been aggressive, I was calm and conversational. I think she was annoyed because I refused to join her in fat-bashing 'her employee' and she had brought up the idea of the 'welcoming atmosphere.' I watched her retreating back as she strode into the store.

Tuesday, February 11, 2014

Yesterday we went to see the movie "Monuments Men," which is a terrific film, and we'd got there in time to get two prime seats. This is in a theatre that has a luxury of choice for people who use wheelchairs or people who can't do stairs. We sat right in the centre seats, able to watch the movie dead on. We were a little earlier than most so we watched people come in and take their seats.

In the end almost all of the spaces designed for wheelchair users were taken and the theatre filled to about a quarter full. The movie begins. At a crucial point someone's cell phone goes off in the theatre. We hear rustling and whispering for a moment behind us. Then, silence. I didn't say anything because I realize that it's easy to forget - although this theatre had a funny, funny, clip about turning off your cell phones. It involved a camel entering an on-screen cinema ... well you had to be there. They'd given us a reminder, but, as I say, I've had it happen to me once so I'm forgiving.

About twenty minutes later, the phone went off again. That was enough for me. I turned in my chair and said, "NOW could you shut your phone off." There was a pair of 'thank yous' that came from the right of us and a smattering of applause from behind us. Nice, everyone wanted to say it, they were echoing my sentiment.

No more phone calls through the show.

On our way out, one of the men who had called out 'thank you' spoke to me about, first the movie, then the phone calls. We both agreed that the first once was forgivable the second one was not. Then he said that he wasn't surprised that I had spoken up. He didn't know me ... if he did, he'd be right ... and yet he thought I'd be the person to speak up. I asked him what he meant.

He said that he figured if I'd been in a wheelchair for awhile I must have learned to speak up, to get people out of my way, or to get people to pay attention, or to get people to give me respectful service. I told him that he was right, disability is a training ground for assertion, but how did he know. He just smiled and said, "I loved someone who was in a wheelchair once, married her too. She's gone now. But I remember," he said tapping his temple, "I remember. She was a firebrand that one." "His eyes had glistened over. I gave him my condolences, which never sound consoling do they, and we said our good byes.

Monday, February 10, 2014

You see, I like to cook. At home Joe and I cook together, as a team, because I can't cook on my own as our kitchen isn't fully accessible. I can chop and mix and stir, but I can't really use the stove top or the oven. Joe will admit, freely, that I'm the better and more creative cook. I can look in a fridge, see what's there, and make up a recipe - and it's usually really good. Joe relies on cook books and exact directions. This is not to disparage Joe's cooking - it's very good. But, in our little family, I'm the one who loves the art of cooking.

So here we are, in a hotel, and I'm about to cook breakfast. Now, here's the thing, they provide a really good free breakfast downstairs in the lobby. Scrambled eggs ... the works. But we have a kitchenette and I am going to make breakfast. I can get at everything I need to - I am going to fry up some eggs and veggie sausage patties. It sound simple. It is simple. Except when circumstances disallow you from doing it.

Notice I said 'circumstances disallow.'

That's important.

I don't cook breakfast at home.

This isn't because I have a disability.

It's because the kitchen isn't designed for wheelchair users.

I can cook breakfast.

The circumstances disallow it.

This is the 'dis' to be considered.

As is often the case with those of us who have disabilities, we can do what the circumstances disallow.

So, right now the circumstances and my disabilities align such that I can sizzle eggs and pop toast and fry sausage. And I'm going to do just that. This evening I'm going to make supper. I don't know what we're having yet but it's gonna be good.

Good partially because I know how to cook and mostly because I'll be loving every minute of the circumstances.

Sunday, February 09, 2014

About an hour into our trip, we are on the road again, Joe remembered that he'd forgotten to bring my weights for my daily exercise routine. Me, being me, thinks immediately, "Darn, that means I won't be able to do any exercises for the week." I couldn't find it in myself to be horribly disappointed. But during our four hour drive I began to think about what it would be like to have to get back into what I'd eagerly let myself out of - I'd figure out a way to still get the exercise in. I did have, after all some exercise YouTube videos that didn't involve weights, I could focus on those.

But then, when we went shopping for stuff for dinner. I had a thought. I told Joe that I was heading over to the detergent aisle. He nodded, thinking that I was picking up a small bottle so that we could do laundry in the small laundrettes that the hotel chain we stay in has in their hotels. But no! I found the aisle and looked at row upon row upon row of laundry stuff.

I set myself at the start of it and started lifting bottles. I wanted to find two bottles, of reasonable weight and of a shape that would work for lifting. Some of the bigger bottles were much lighter than some of the smaller bottles. I'm not a scientist and can barely do math, I have no explanation as to how that could be true. So, slowly, I made my way down the aisle picking up bottle after bottle, feeling it's weight, assessing its shape and then moving further down. I thought I'd try a bunch and then go back and pick the one that I felt had enough weight to be usable and had a good 'lift-ability' factor.

About three or four minutes into this, I notice a young man, maybe eighteen years old, with his mother. They were watching me with a kind of startled interest. They weren't staring at me, they were watching my behaviour. Of course, they assume, as many do, that people with disabilities either can't hear the spoken word or can't understand those words when clapboarded into a sentence. So I listen to them trying to diagnose my 'symptoms.' I find this profoundly funny. They talk about my obsession with the laundry soap. They talk about my needing to lift and touch the bottles. I heard the word 'sensory' spoken a couple of times. It's PHD television.

So, I've settled on the soap that feels right and is good with lift-ability. The last question will be answered when Joe arrives. Which he does just as I'm finished. I want to know if I've picked a brand we'd use, because after getting home, the soap can stop being weights and become soap again. Joe said that my first choice, which he'd leaned down to look at, was fine. I heard them talking, relieved that my staff was there. I whispered to Joe, "Kiss me." Joe looked startled, and I said it again, "Kiss me." He shrugged his shoulders but as he stood up again he planted one on me.

They were shocked, I rolled by them saying, "That's a sensory experience I like too!"

I'm still chuckling at the shocked look on their faces. Ain't never seen THAT on TV.

Saturday, February 08, 2014

I had two very different responses to my blog yesterday. Before talking about them, I'd like to explain how the post came to be written. I got up, had a good morning, got on the bus, the driver was wonderful, the ride was going quickly, we turned a corner and WHAM!! Out of no where came this flood of words, memories overwhelmed me of the times, mostly while young, that I was brutally bullied - the words that were spat out at me - the bruises left on my body - the names, the taunts, the purposeful cruelty. It all came back, I couldn't stem the flow. When I arrived at work I felt beaten, exhausted and ill prepared to face the rest of, what was to be, a very busy day.

I decided I'd write the experience out. It came to me that I'm not alone. That there were others, riding on different buses having the same experience. That there were people vastly different from me who were hearing words that aren't far enough away in time to echo. I wanted to write this experience as my way of saying, "Me, too. It happens to me too." Sometimes I want to feel normal when something happens that makes me feel abnormal.

The first reaction was one that came in an email suggesting to me that I really need to have better boundaries in what I share on the blog. The writer suggested that I looked both pathetic and attention seeking in how I presented myself and the bus ride. They were saying this, they said, because they thought that someone needed to tell me the truth.

I still haven't replied.

The second reaction was a conversation I had with someone who'd read the blog and we sat and shared about these experiences. If nothing else came from what I wrote, I'm glad of this conversation. I needed it. I'm not sure if he did, but I did. It was amazingly supportive to speak honestly about the gruelling and sometimes punishing nature of what it is to be different - or seen as different. After we talked I simply felt better. Less alone. Here I thought I'd shared this so others wouldn't feel alone when assailed by voices that visit with vengeance. But it was me who needed to feel less alone.

I know that some find some of my writing too personal and question why I share as much as I do. I get that. I understand but, remind myself that this is my blog. It's where I record my life, it's where I seek community, it's where I feel a responsibility to be authentic and real. To that end, I chose to write what I wrote - knowing that I was letting people into a very private and very painful moment.

My hope is, always, that what I write matters, and that the words connect with others who share similar moments in different lives.

Thursday, February 06, 2014

During the winter the amount of exercise I get drops significantly. I use primarily my power wheelchair since the manual simply can't handle the snow. When we travel with the manual I opt, much more regularly to sit in the car and wait while Joe runs errands. In the summer, I usually go with him. So I worry that I'll lose arm strength and endurance over the holidays. This year I decided I'd try to see if there were exercises I could do to keep myself strong and flexible. I was pleasantly surprised that there were lots of seated exercise videos that I could follow along with. I'm up to about an hour a day and I'm kept interested because I vary the programs depending on the day. I thought I'd share some of these with you.

First up there's these guys ... I enjoy their banter and it's nice, on an exercise tape aimed at helping people with limited mobility and people who are fat, that one of the people is big ...

For an aerobic workout that's fun, at least for me, even though some of the music is annoying, I like this woman, who looks fairly passive but puts you through your paces ...

Then there are the shorter ones ... I like the arm exercises here ... I use an eight pound weight, just recently moved up from the five pounder and it gives me the sense that my arms are really working. It's only nine minutes but it is, for me, a long nine minutes.

Then theres' these folks, I like the wry grin on the face of the guy up front, it's odd because it starts when they are already going and seems to continue after it ends, but for a light workout, it's great ...

A couple more, like I told you there's a lot of resources. I like the short inspirational posters that pop up in this one ...

And, then, this guy also has a nice manner, I can't do some of the stretches at the end ... but the rest is good for me ...

I also have a few wheelchair exercise DVD's but I found that I used those so often I got bored with the routines. Mixing these in really helped.

I decided to share these because, while there were lots, in fact there are several I left out, I found that these were the ones I came back to time and time again. I thought these would be a good place to start if you're looking for some exercises for the winter. I'm hoping that when I'm back on the road in my manual, I'll still have the ability to push myself long distances.

Wednesday, February 05, 2014

Years ago we went to Hawaii for a conference and, of course, we took a few days holidays after the work was done. It's a beautiful place to be and we have lots and lots of memories. (Including one of a woman, in a bar, who claimed to be a psychic, and who told the friends that I was with that I was a 'drag on their energy' and that I would 'hold them back from achieving their life goals.' Um, yeah, I think she was more bigot than psychic but, hey that's just me.) One of which was doing something we weren't supposed to do. We'd arrived at the car rental counter to be given an upgrade, which really meant they were out of the kind of car we'd rented, and we ended up in some very sporty, very musclely kind of car. It's the kind of thing that you had to sign a "I will not go off-roading in this vehicle" form.

Well.

We lied.

We came to the end of a road somewhere and there were a bunch of people off-roading over some territory that looked fun to drive. So, we did. We bounced and screamed and did the kind of vacation stuff that you do when you mind is disengaged from the concept of adulthood. It was fun. We had the vehicle washed professionally to ensure they'd never know and tucked the memory away in the spot where good memories go.

I think if this now as I'm out in my power chair. This time, though, I'm 'on roading'. This means that the curbs that allow access to the sidewalk are completely impassible and I'm heading down the sides of streets, both major and minor. I figure that at least, at my size, I'm visible. I've written about this before, but there's a difference. Now the roads are often equally covered with snow and ice and are bumpy and unpredictable to drive over. A couple of times I've had some real scares.

Yesterday a police officer spoke to me about being on the road and I explained that the curbs do not allow me access and this is my only choice. He took a breath and before he could speak, I said, "And don't tell me that staying home and being a shut in is a choice." He shook his head and said, "I wasn't going to say that," then paused, grinned and said, "well, yes I was. But you are right, that's not a fair option." Then, all police like he told me to "proceed with caution."

I've found though that, except for a few jerks, those driving cars have been extremely understanding and very willing to share the road. It's like they get that they don't want to have to drive in this stuff but have no choice and, as in the moment they understand 'lack of choice' they extend that understanding to me. I've gotten a fair numbers of 'thumbs up' and a few have rolled down their windows to shout encouragement to me. "Roll on!" being my favourite.

Tuesday, February 04, 2014

I am honoured to announce that Rolling Around in My Head has been nominated for two Canadian Blog Awards: Best Personal Blog and Best Health Blog. I would appreciate it if you could drop drop by the voting page for The Canadian Blog Awards and vote. You do not have to be a Canadian to vote ... Belinda, who comments here sometimes, is also nominated for her Whatever He Says in the Religion and Spirituality category. I know some other readers have nominated blogs, please let everyone know in the comment section if you'd like.

Yesterday I was going out with for lunch with my team at work. We decided to go a get-together after the holidays rather than before. This way it would be less rushed and it would give a nice break in the bleak mid-winter. I had chosen the restaurant but, because of all the snow, I decided to give them a call about an hour before we left. When I called, the woman who answered, explained to me, when I asked about accessibility for a wheelchair, given the snow and the long walk from the parking lot to the restaurant. She said that she'd go and check. I told her that I appreciated her efforts.

She came back to tell me that the sidewalks were somewhat snow packed but she thought they'd be OK and she assured me that they'd get out a shovel and clear the ramp before I got there. I thanked her and hung up. It was only then that I realized that A) they were open and B) they didn't bother to shovel the ramp. While it was nice that they'd do it because they knew I was coming, wouldn't it have been nicer if they did the ramp at the same time that they did the stairs. I was also worried about the assessment of a snow packed sidewalk being 'I think OK' ... because with narrow tires on my manual chair that can be very difficult.

I called another restaurant, same chain, a few minutes north. I spoke to someone there who was having trouble with my questions. "I'm wondering if the accessible options have been cleared of snow?" The reason he was having trouble was that he was offended. "Of course, we clear all entrances of snow every morning." I paused, realizing I'd almost insulted him with my question, I didn't want to get into an explanation of why I needed to ask. He filled the pause by explaining to me where the accessible parking was and the distance, in both feet and meters from the accessible spot to the door. OK. Good.

Monday, February 03, 2014

I acknowledge right off the bat that I'm going to sound like a petty minded, ungrateful and perhaps even bitter, man. Even so, I am committed to write accurately about my experience as a man with a disability and therefore I'm going to go ahead.

Yesterday when I got home to the apartment, riding over really icy sidewalks all the way, I was alone. Joe had popped into a small local grocer to pick up a couple of tomatoes and we'd agreed to meet back at the apartment. There was no one around so I went into the manoeuvres that are required for me to get both doors open and get myself through all at the same time. I learned to do this soon after I started using the chair, it was one of my first real accomplishments as someone new to being in the world on wheels.

A few moments later I was in.

The security guard who sits at the concierge desk was 'on patrol' so that meant that I was to let myself in. This took me, I'm embarrassed to say, almost four years to figure out. I have to use a key, but the door pulls open on the same side as my controls, I can't open the door and drive through at the same time. But chance and circumstance had me, one day, holding the door open for a young couple moving in. I realized then that I can pull the door open with my left hand, then still holding on, I can simply turn the chair backwards and back in. Voila! I was in.

And that's what I did. It worked like a charm and I was in, warm and comfy, waiting for Joe to get back in. I was actually able to open the door for him when he got there. A nice change.

Here's where I'm going to sound petty. I was thrilled. Just thrilled that there was no one around to help me. People are often very kind and rush to get the doors for me. I appreciate that, I do. I really do. Let me emphasize that again, I do appreciate people's willingness to help. I've learned, over time, to accept the help and say thank you - and even mean it. But, sometimes, just sometimes, I'd like to do what I can do without the burden of being helped to do something I don't need help with. I know it takes me longer, I know I do it in a complicated manner, but I can still do it. I sat in the lobby waiting freed of the weight of gratitude.

When this happens I am always reminded of, very early on in my career, helping a young woman with a disability to do something that she could do herself. She stood her ground and said, "You aren't helping! You are in my way!!" I was startled at first and later when recounting this with a co-worker, I was told that she could be "rude." I said then, and think now, that she wasn't rude at all. I think she'd learned to assert herself in such a way that allowed her voice to be heard. Over time, people stopped helping her do what she could do herself and, magically, her rudeness disappeared.

Because my relationship with those who jump into help is one of stranger to stranger, not staff to resident, I've not gone the rude route. But I understand her frustration, now, more than I did then. You work hard to get skills, you want to use them. And when you need help, you ask.

Again, I am appreciative of people's willingness to help me with the door. If there had been someone there yesterday who helped me, I'd have said 'thank you' and I'd have meant it.

Sunday, February 02, 2014

We were in the grocery store getting stuff to make radish stew. It's been cold out and we decided that a nice stew in the slow cooker was a terrific idea. We'd gone early, had breakfast in the store, then set about reviewing the grocery list and assigning tasks. The store is huge and I'm usually given the task of going to the north west corner of the store where they keep some of the frozen 'nature' stuff. We agreed to meet in the produce section after having collected some of the other things on the list.

When I arrived I noticed Joe looking completely frustrated. I rolled up to him and he glanced over at an elderly man and a middle aged woman then said, "I'm having trouble keeping my mouth shut." Over the next few minutes sharing space with the two people he'd indicated to me I came to understand exactly what he meant. So did everyone else in the area.

He used a walker, she was pushing the cart. It became clear that she was a 'helper' and that she was, as Norm and Emma have written about, hell bent on helping. She lectured, that's right, lectured him on everything. He chose this and she thought he should buy that. He stuck to his guns and never capitulated to her constant 'I know better' attitude, but it was clearly wearing. At one point she was telling him that he should use more herbs in his cooking and that the herbs they had in the store were on sale. "I neither want nor need herbs," he said, exasperated but not yet angry. She, however, was growing angry at what she seemed to think was his purposeful non-compliance with her advice.

I don't know how she couldn't have seen the looks on the faces around her. But like many paid care providers, she seemed to think she was invisible in public. I've stressed, often, in my trainings that we are supervised, whenever we are in public, by every single person who sees us. We educate people about how to speak to and interact with those in our care. This woman was a dreadful example of what it is to be in the care providing profession. And, of course, an even worse example of how to speak to and be with someone with a disability.

Like Joe, I had difficulty keeping my mouth shut.

But, I'm glad I did.

Just before we left I heard him say to her, quite gently, "I appreciate you helping me with shopping but let's be clear, you are paid to help me get what I want and what I need. Right now you are at work, I am your employer not your child, I need your help, I don't need your direction."

I felt like cheering.

He may have needed her help but he didn't need ours. She said something to him, quite quietly, something that no one but him heard. He just smiled at her and said, "let's go over and get some bread."

Saturday, February 01, 2014

After doing a brief bit of research on the web looking for hotels in a city I've not been to before, I found a couple possibilities. I wrote down their phone numbers preferring, as a disabled guest, to actually speak to someone about accessible options. I usually stay with a hotel chain that has a very solid process for booking accessible rooms but they didn't have a hotel within driving distance of where we were going. I took a breath and picked up the phone.

All was going well. Dates and time of arrival were done and then I asked if they had any accessible rooms available for the days I'd be there. The woman on the phone asked, "What kind of accessible room does he need?" I corrected her, kindly, "Oh, I'm making this reservation for myself, I am a wheelchair user." She filled the word "Oh" with so much meaning it almost tipped over.

Then, she started speaking more slowly to me. Up till then we'd been talking at a brisk pace. Up till then she'd assumed, I don't know why, that someone without a disability was making a reservation for someone with a disability. With accurate information everything shifted in her head, and with that shift came a new and different manner. She spoke more slowly. She double checked my answers. She said, "Are you sure you've checked those dates on your calender?" At one point she wanted to know whose credit card I was going to use to book the room. When I said, "I'll be using my own." She said, "Oh" again as if her voice was full of helium.

When it was all done, and I'm sure it took much longer than it would have if Joe had been making it for me, as he sometimes does. My disability changed me from just a voice on a phone line to an image in her head. In her mind people with disabilities have things done for them, need things explained several times, make simple mistakes about things like dates and DON'T have a credit card.

Did I kick up a fuss? No. I need a hotel room. This was my preferred hotel to stay in. I'll talk to the manager on check out, for now, I need a room not a battle.

But ... really ... WOW.

That's how deep it goes ... prejudices and preconceptions of people with disabilities. Just knowing that a faceless voice rides on wheels is enough to elicit discriminatory practise.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.